The Blue Cross Blue Shield Association (BCBSA) and the National Minority Quality Forum (NMQF) have issued a brief urging the Office of Management and Budget (OMB) to update its regulations on collecting and reporting data on race, ethnicity, language, sexual orientation, and gender identity. OMB’s current standards are inadequate, with only two category options for ethnicity and five for race, and no requirement for collecting sexual orientation and gender identity (SOGI) data. The BCBSA and NMQF recommend OMB apply its updated standards to both private and public entities, and to seek stakeholder feedback on including SOGI data in its regulations.
The Office of Management and Budget (OMB) has the potential to improve health equity nationwide by updating its standards for collecting and reporting data on race, ethnicity, language, sexual orientation, and gender identity. According to an issue brief released by the Blue Cross Blue Shield Association (BCBSA) and the National Minority Quality Forum (NMQF), OMB’s 1997 Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (Directive No. 15) needs to be updated to reflect the diversity of the nation’s population.
Data is a powerful tool in understanding health disparities and designing solutions that meet the needs of disproportionately impacted communities. However, the current standards for data collection on race, ethnicity, language, sexual orientation, and gender identity are inadequate. Directive No. 15 only requires data collection for two category options for ethnicity (Hispanic or Latino and Not Hispanic or Latino) and five for race (American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Pacific Islander, and white). This is in contrast to the Centers for Disease Control and Prevention (CDC), which includes over 900 categories for these two designations. Moreover, Directive No. 15 does not require the collection of sexual orientation and gender identity (SOGI) data, which is missing from many regulations and standardizing entities.
OMB is expected to release changes to Directive No. 15 in 2024, and the BCBSA and NMQF have offered four recommendations to incorporate into upcoming regulatory changes. First, OMB should use industry interoperability standards as a foundation for their new standards. Directive No. 15 should include a minimum standard for disaggregated race and ethnicity data. OMB could align its regulations with Fast Healthcare Interoperability Resources (FHIR) standards.
Second, OMB could align its standards with the Department of Heath and Human Services’s (HHS’s) Assistant Secretary for Planning and Evaluation (ASPE) and Office of Minority Health (OMH) standards. Data standards must have been proven effective for national survey data collection, and compliant entities have the freedom to go beyond these standards in gaining detailed data. The standards also comply with OMB regulations and are designed for data collection from individuals for population-based surveys.
Third, OMB should seek out and encourage stakeholder feedback on SOGI data inclusion in Directive No. 15. The stakeholder pool should be diverse to ensure that all perspectives are taken into account. High-quality, reliable data are essential to understanding where and how health disparities arise. Sufficiently collecting and exchanging data requires a multi-stakeholder approach.
Finally, the BCBSA and NMQF suggested that OMB apply its Directive No. 15 standards to both private and public entities. The universality of inequities in healthcare demands a universal response.
BCBSA has been vocal about health equity data standardization in the past. In 2022, the organization released a data collection standardization roadmap. The plan addressed how to use data collection to improve quality of care disparities, access to care disparities, and disease prevalence disparities.
Other organizations, including the Urban Institute and AHIP, have also offered additional recommendations. Building trust between minority communities and the healthcare industry and expanding the granular options for racial categories are some of the other suggestions. Updating OMB data regulations can play a significant role in reducing health disparities and promoting health equity nationwide. Through the adoption of comprehensive data collection standards, the healthcare industry can address health inequities head-on and create a better system of health for all Americans.
